Curiosity

I’ve gotten to the point where my need for a heart transplant is public. I need to advocate for myself to be sure to make my life up to and after transplant as easy as possible and that means people have to know about it. So far I’ve gotten a one story house since stairs make me tired now and could be difficult after surgery. I’ve also enrolled MAEB in part-day prek and I have some childcare lined up for Will. Sometimes I feel judged. I almost feel like telling people about my heart can be viewed as a kind of ‘name dropping’.

“Oh she’s just using that to get…”.

But then if I don’t tell people I have a feeling they see me as a healthy young woman who doesn’t work putting her kids in daycare.

“Can’t she take care of her own kids? She isn’t even working.”

I’m working on being less paranoid about what others are thinking of me and just getting on with it. That being said, I feel like a lot of people are curious about the aspects of the transplant but don’t want to ask for various reasons. I had someone ask something the other day and say, “I hope it’s not too personal.” For me it isn’t at all. It is just a fact of life. I’m super interested in the medical field and find it all fascinating so I thought I’d host a little q&a for all of those who want to know! Post a question below and I’m happy to answer it! I’ll start with a few I’ve already heard to kick us off!

Q: Do you get a beeper?

A: Nope. This is 2015, we just use cell phones 🙂

Q: How are you feeling?

A: Mostly tired. Some days are great and some the exact opposite.

Q: What’s wrong with you?

A: Nothing 😉 just kidding. When your heart (a muscle) contracts it is supposed to expel 55%-70% of its total blood volume. Mine only does about 15%. My muscle is severely damaged, probably from a virus at some point in my life and will never regain its function. What I have is called an idiopathic (meaning no one knows where it came from) cardiomyopathy.

Jodi I will get to leave the hospital 7-10 days after surgery. I will have to stick to a 10lb lifting limit for the first 6 weeks. After 6 weeks I should be able to drive. I think the full recovery to totally normal is about a year but since I’m in such good starting shape it will be less.

Jean, not quite. She’s always know that mom’s heart doesn’t work well. She has a lot of stress with the move and with Dan still living at Riley so we are waiting until things settle down again. We believe there is no reason to give her extra worry until the time comes or some of the other worries go away. Unfortunately there aren’t tons of resources on how to deal with small kiddos and transplants. There is a Facebook group of transplant patients from my hospital on Facebook so they are a great sounding board!

1b: may be at home or in the hospital. If at home receiving some constant medical support (ie. LVAD, IV medications at all times through an arm pump, etc.).

1a: in the hospital receiving multiple interventions or on life-sustaining devices (ventilator etc.)

There is a chance I’ll start IV meds when things calm down which would move me from a 2 to a 1b.

As far as my EF (ejection fraction – the contraction ability of my heart currently about 15%), I don’t think that much comes into play but the symptoms that go with it. Some people with an EF of 15%, like mine, can’t get out of bed and operate on a day to day basis. I don’t know if there is a specific number where they say ‘yup now you’re a 1b’ just because of that number. If something were to happen (sudden cardiac arrest- which would cause my ICD to fire) then I imagine I would require more intervention which would move me up.

If/when you get a transplant if it comes time for yall to pcs will u have to stay to follow up with your own cardiologist or will you have to get a brand spanking new one who doesn’t really know your case as well? … I could do this all day! I love hearts! Haha

Lauren, since I am enrolled in the Exceptional Family Member Program (EFMP) we have the ability to request a compassionate reassignment. Depending on where we are in the process we may request that Dan stay at Ft. Leavenworth or Fort Riley so that we can keep this team. If I’ve already had surgery and we do decide to PCS, EFMP has limits on how far I can be from the care I need.

Jenna, I have led our congregation in prayer for you. My questions would be these:
How long does it generally take to find a donor? Aside from the obvious prayer for a good donor & a successful transplant, what are some specific things you’d like us to pray for?

The average wait time at St. Luke’s is about nine months. Prayers for my kiddos especially my daughter would be lovely. This is obviously a stressful time and they simply don’t have the life experience to know how to handle it. I’d also appreciate prayers for my entire support system (doctors, nurses, family etc.) Being a caregiver can be very stressful and I hope they can find peace and not worry too much. Thank you for everything.

I will be on immunosuppression medications (anti-rejection) for the rest of my life. They all have their side effects but some examples are headache, nausea, diarrhea, osteoporosis, cataracts, weight gain, mood changes etc. While none of the side effects sound great keeping my new heart is worth whatever they throw at me. Everyone experiences some rejection but that doesn’t mean that you lose the heart. You just have to find the balance between side-effects and a happy heart!

Jenna, thinking and praying for you every day! I have 2 questions: 1). Is the list you are on regional? Or national?
2). How many people are in each category? And if a heart becomes available and doesn’t match the others in 1A or 1B, would you be next?

Lauren, the list is regional for me. St. Luke’s only accepts hearts within 600 miles. A heart needs to be in its new home within four hours so you can’t get a heart from a coast that fast. The good news there is that there are far fewer people in the midwest so the wait time tends to be shorter.

St. Luke’s only has about 30 people on their list at a time. I’m not sure the entire breakdown but last I heard they only had 1a. You are correct! If a 1a doesn’t need it and a 1b doesn’t need it the 2s are next! It does happen too so we can keep our fingers crossed!

They are making headway but as that happens the heart transplant gets better and better too. So if you think of it as climbing stairs it plays out like this. If heart transplants and stem cells/artificial hearts are kind of climbing at the same rate however transplants started on the 5th floor and stem cells/artificial hearts started on the first floor. They are both getting up there but transplants are still ahead.

Hi Jenna thoughts and prayers for you and your family. You are a smart, caring, motivated, unselfish and amazing person! Keep up the good work enlightening people on Heart facts. Stay Healthy and keep me posted! LOL

Hi Jenna! Just want you to know I am praying for you! You are a strong and amazing person and I am so glad to know you as a friend–no matter where the roads take us! Hang tough tough and trust the process. God has this, and Y-O-U! Miss you! Ashley McHugh

They generally look at people between 15 and 55 for a heart. They will adjust that range based on the patient. So for me they aren’t going quite all the way up to 55. They also aren’t going all the way down to 15. Since my heart is so enlarged at this point the parts where they will attach my heart would be too big to fit a 15yo heart.

There are less people on the list in the Midwest for a few reasons. First of all the population is simply lower here than in NYC, Boston etc. Also, more people think to travel to the bigger cities when they experience a problem like this especially if they are already on a coast.

I can’t get matched while out of town. We are staying in Kansas until this is over. If something extreme happens and I have to leave town they change me to a ‘7’ or inactive status until I get back in town.